If you think you might have ADHD, it can take months, maybe even a year to get a diagnosis.
A public conversation about the condition, led by advocates, has meant more people are seeking help — but the system for getting assessed is laborious and costly.
Now, Greens Senator Jordon Steele-John, a key force behind getting the disability royal commission set-up, is taking on ADHD and will use a parliamentary inquiry to advocate for an overhaul in how the condition is treated.
Today, Jordon Steele-John on why it’s time for Medicare and the NDIS to include ADHD.
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From Schwartz Media, I’m Ruby Jones. This is *7am*.
If you think you might have ADHD, it can take months, maybe even a year to get a diagnosis.
A public conversation about the condition, led by advocates, has meant more people are seeking help – but the system for getting assessed is laborious and costly.
Now, Greens Senator, Jordon Steele-John, a key force behind getting the disability royal commission set-up, is taking on ADHD. And will use a parliamentary inquiry to advocate for an overhaul in how the condition is treated.
In an article tomorrow in *The Saturday Paper*, he makes the case for the NDIS to be expanded to cover ADHD as a primary diagnosis - a decision that could impact half a million people.
Today, Jordon Steele-John, on why it’s time medicare and the NDIS included ADHD.
It’s Friday, February 10.
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Jordon, last year, you and your office put out a call - you wanted to hear from people who live with ADHD. Tell me - what kind of response did you get?
Yeah, absolutely. So my team kind of operate on the principle that part of the way that you make good policy proposals in the role of a decision maker in parliament is actually beginning with engaging with community, and ensuring what you're asking for, what you're campaigning for, is actually in line with what people need.
So we wanted to have at least a thousand respondents to our survey within the month that we put it into the world. And we were, and still are, thrilled with the fact that over 10,000 people, from over 790 postcodes across the country, took the time to fill in the survey and give us their lived experience.
So 10,000 people - ten times what you were expecting!
Ten times the amount of response. And I should also mention that we received that in like, two weeks. So it was meant to get a thousand respondents over the course of a month, and it was 10,000 respondents in about two weeks or so, which was just stunning.
It was incredibly moving, and a privilege, to be able to have the opportunity to absorb so many people's stories. A lot of people showed incredible vulnerability and trust in participating in this process. I'm so grateful that they were willing to do that. I think one that really sticks with me, is somebody that wrote to us and said that they feel like they're in a kind of Catch-22, and that they are playing a game without knowing the rules. And that really just keeps going around in my head because of how deeply frustrating and distressing, both how I can imagine that would be. But also I've got experiences in that myself. You know, it's a hard thing when you turn up to a workplace, or a community space, and it's inaccessible because somebody just didn't think to put a ramp in, you know. And equally, I can imagine why it would be absolutely infuriating to have the very different support needs that folks with ADHD have. And yet, when you flag them, you're kind of dismissed and disregarded in that way.
And you're the Greens spokesperson on health and disability. So you're someone who knows a lot about the concerns about access to care for people with different health needs beyond ADHD. And I just wonder, what was it about the stories that you heard from people who have ADHD that convinced you that this was a campaign that you should take on now? That ADHD should be considered under the NDIS as a matter of urgency?
Yeah, under the NDIS as a matter of urgency, and also of course within Medicare as a matter of urgency. And I kind of… I can point you to exactly the things that really struck me. One was around the time that it takes to obtain a diagnosis. So acknowledging that self-diagnosis is valid for many people, and getting that formal diagnosis is incredibly affirming for them, and opens up an entirely new world of support that they can access. Of the respondents that responded to our survey, 23% of those people say that it took them more than a year to obtain that diagnosis. So it's an incredibly long time for a really life changing diagnosis. And that is, you know, there are a lot of other caveats in there, about where you live geographically, or what your capacity is in terms of your financial situation, because you've got to be able to afford these appointments to be able to get the diagnosis in the first place. So that's the first thing that hit me.
The second one that hit me really bluntly was, say you have been able to get through those first pieces of… you've got to your GP, you've got a referral, you get to your psychologist (or psychiatrist) and they say, “okay, we are going to give you… we are going to take you through the diagnosis process.” that can cost…33.5% of people said it costs between $500 and $1000 for that diagnosis, and a further 28.7% said between $1000 to $2000. And we were given a figure that ranged from some people, in very rare cases, being able to access it for free, which was amazing. One person, $25,000, it cost them, to get a formal diagnosis. These are totally prohibitive figures, that are actually the choice between paying your mortgage or getting a diagnosis, feeding yourself, or getting a diagnosis. Absolutely unacceptable in the context that 500,000 Australians are estimated to have ADHD.
You mentioned the discrimination that people said that they face when they're trying to get diagnosed at other stages as well, in the kind of process of understanding the condition. Can we talk a bit more about that? Because there is this stigma, I think, there's a belief in some parts of the community that ADHD is actually over-diagnosed, or that drugs are over prescribed for the condition. So, you know, having spent all this time speaking to people and looking into the ways that the condition is treated, what is your response to those views?
Yeah absolutely, one of the things that stuck out to me so strongly in the survey responses, is that of the roughly 54% of people that had received a formal diagnosis, there was then a cohort of nearly 50% of people that had not received a formal diagnosis. So there were people that identified as having ADHD, but they actually had not been able to access the diagnosis to confirm that in one way or another. And that was of the cohort of people that actually wanted a formal diagnosis, if that makes sense. And the reasons that they identified for that, that kind of not having a diagnosis, number one, was the prohibitive cost factors. But the second highest reason they gave was that they did not believe — 55% of them did not believe— that doctors would take them seriously. So it is something that is absolutely real and tangible. The discrimination is a blocker to accessing those supports. And one of the things that I'm hoping to achieve through the course of this inquiry is to get a really solid set of recommendations about how the government could work with medical professions to tackle discrimination against folks with ADHD because it is not okay.
If I go right now into, you know, into a medical setting or an assessment setting and I ask for a wheelchair — as somebody with a physical disability — I'll be able to get that wheelchair. You know, there might be a bit of argy-bargy over the quality of the wheelchair or, you know, whether the NDIS will fund this wheelchair versus that wheelchair. But I'm not going to receive a response, or I'd be very unlikely to receive the response: “Sorry, Jordan, we're not going to give you a chair. We don't think cerebral palsy is real. Please go and drag yourself around the pavement for the next ten years.”
But if you are somebody with ADHD seeking that formal diagnosis and a medication based support, particularly, you are so often dismissed by the very people that you need support from. Or the very support mechanisms that are actually meant to be put in place to support you.
We’ll be back in a moment
Jordon at this point in time, the National Disability Insurance Scheme doesn't include ADHD. So could you tell me what that means for people who have the condition, how does that make things more difficult for them when they're trying to access care?
Yeah, I absolutely can. So at the moment, ADHD is not not listed as a recognised disability by the NDIS, which enables you to gain access to the scheme. So on the list of conditions that enable you to be a participant, ADHD isn’t there. Now there are people with ADHD who are on the NDIS, but they are on the NDIS because they have another co-occurring disability which is on the list of recognised conditions, if that makes sense. Now what this practically means is that there are many people with ADHD that need support and want to be eligible for the NDIS to be considered for access to the scheme. They simply are not able to do that. Now there is a conversation within the ADHD community about whether people identify as disabled people, right? And some respondents said that they did, and some respondents said that they did not identify as disabled people. But on the question of did they think that you should be able to access the NDIS for ADHD based supports, 54% of people said yes. So there is a real understanding in the community that this would change people's lives and that's why the Greens are the only party at the moment with the formal position of supporting the expansion of the criteria to enable you to be part of the scheme, purely based on the fact that you have ADHD.
But I would also say to you, Ruby, that on this particular question, one of the things that's come through so strongly is, yes, NDIS access is important, and you should be able to access the NDIS because of ADHD. But the other thing that we really need to urgently address — and that the Greens support — is bringing ADHD diagnosis into Medicare. This is one of the life changing things that we can do right now that actually doesn't involve interaction with the NDIS, but that it would be so transformational for people. 92% of respondents to the survey said to us that they wanted to see diagnosis brought under Medicare, because of the cost barriers in terms of gaining that formal diagnosis. Now, if we do that, it gives people a pathway to access those both medical and non-medical supports for ADHD, it also is the critical barrier you've got to clear to then be able to get onto the NDIS when that criteria changes.
And the NDIS Minister Bill Shorten, has said the scheme won't be broadened to include ADHD, that there are no changes planned at this point in time. What hope do you have of changing his mind?
Well, the NDIS is currently under a broad ranging review. So there are opportunities for a new pathway forward to be charted. But I would say to you first and foremost Ruby, the ADHD community, as part of the broader disability community is a powerful, proud, connected, and effective community. Disabled people more broadly have proven during the course of the Morrison government, and the last couple of decades of that nightmare, through to through to these kind of first months of a new government, that we maintain our political power, and we are very much of the view that we should decide where and where is not the appropriate boundary to be set, where our expectations are in relation to our NDIS. So the Minister, you know, may well have that view, but the disability community, and the ADHD community, and the broader neurodiverse community, have a very different view, and will continue to campaign for that expansion of the criteria because we understand that it makes sense.
And the story of ADHD and how it's treated in Australia. Really, it's the story of so many health conditions that fall between the gaps, whether that's gaps in medical understanding, or gaps in policy. And so when you think about how much we have come to learn about this disorder and the treatment of it over the past few years, what does that say to you about how imperfect our system can be? and how it can lag behind the latest knowledge? And what lessons should we take from this more generally about reform?
I think there's a couple of key lessons there. First of all there's a kind of accountability that needs to be taken by political decision makers in this space. We've got 500,000 Australians with ADHD, facing incredible financial and access barriers to diagnosis and support, while experiencing really serious discrimination. When we look at the way that Medicare at the moment has only recently been dragged kicking and screaming to provide autistic people diagnosis beyond the age of 13, and still denies access to diagnosis to people older than that. If you combine that with the ADHD and the dynamic there, what you actually see is a system that's being driven by political decision makers, not only to fail to proactively seek out where support is needed, but to, when it is confronted with the reality of the support needs that exist. It responds by gatekeeping, rather than flagging unmet needs, and providing those additional resources.
So those things really stick with us, but also what sticks with me and what excites me about this inquiry, what really genuinely does…and I know politicians, you know, and people in Canberra, are famous for loving and, you know, an inquiry for the purpose of an inquiry. What really excites me about this is that the community have clearly identified barriers to cost, the barrier of access to diagnosis,, and discrimination and the need for better supports broadly, as the three key areas. And we can now go as a committee and systematically investigate these areas and put forward concrete recommendations, whether it's expanding access to the NDIS, whether it's bringing free under Medicare. Like we can do this. This is not impossible stuff. We can fix these barriers and literally change the lives of 500,000 people, in consultation with that community. And that just, to me, is what the community wants their representatives to be doing.
Jordon, thank you so much for spending the time talking about this to me today.
Thanks so much, Ruby.
You can read Jordon Steele-John's full piece in *The Saturday Paper* tomorrow.
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Also in the news today,
The former Liberal minister, Alan Tudge, is resigning from politics. Tudge held several ministerial portfolios under the previous government, and was the human services minister at the time when Centrelink was sending out unlawful Robodebt debt notices – events he was questioned over at Royal Commission hearings last week.
The resignation of Alan Tudge will lead to a by-election in his Melbourne seat, and has already led to speculation that the former Liberal treasurer, Josh Frydenburg, could try to re-enter the parliament.
The Greens have accused Labor of seeking to circumvent a court decision that allowed 100 refugees to be released over Christmas.
The federal court ruling on the use of the ‘character test’ for visas meant that the group of refugees were released – but this week, Labor altered the rule, a change that means the group of 100 refugees will be re-detained.
*7am* is a daily show from *The Monthly* and *The Saturday Paper*.
It’s produced by Kara Jensen-Mackinnon, Alex Tighe, Zoltan Fecso, and Cheyne Anderson.
Our technical producer is Atticus Bastow.
Our editor is Scott Mitchell. Our head of Audio is Sarah McVeigh. Erik Jensen is our editor-in-chief.
Mixing this week by Zoltan Fecso and Atticus Bastow.
Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.
I’m Ruby Jones, see you next week.
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